Help me help you. I will be on a TV show and....

Discussion in 'Fibromyalgia Main Forum' started by featherme, Feb 11, 2007.

  1. featherme

    featherme New Member

    I need help from you to tell me the most important things in daily living with FM. Things such as:

    1. Pain
    2. Loss of ability to do things such as ....
    3. Doctors who don't provide sufficient pain meds for you to be able to do more things
    4. Hands on - osteopath - massage, etc.
    5. HMO doesn't provide alternative treatments
    6. HMO doesn't provide necessary meds - I was given 15 tablets of lunesta for a month!!!!! That was changed - now I have to reup in three months.
    7. Attitudes of family and friends
    8. Seems progrssive as more things seem to not work body wise.
    9. Fatigue
    10. Frustration
    11. Support groups
    12. Need for talking to professional - I see a psychiatrist for the lunesta and a therapist who has helped me find a life.
    13. Other........
    Thanks!
  2. cct

    cct Member

    Featherme,

    I have both Fibro and CFS. I was diagnosed with CFS 16 years ago and Fibro a few years later.

    I agree with all of the things on your list of " the most important things in daily living with FM ".

    However, I would like to add one important thing (from my personal experience). I think that the difficuly of finding an understanding and supportive physcian is extremely important.

    A fibro person may not be directly involved with his/her physcian everyday, but the attitude of the diagnosing physcian can make all the difference in a person's ability to cope, both physically and emotionally.

    When your doctor does not believe that you are really sick, it makes every other aspect of dealing with Fibro and CFS so much more difficult.
  3. sewcrafty

    sewcrafty New Member

    1.Sleep is very important. Most of us lack REM Sleep. I just found out I do not have any Stage 3 or Stage 4 REM Sleep, in which is the cycles that our body heals itself.

    Lack of sleep effects pain, pain effects sleep. Its a terrible cycle in which has now caused me to have sleep apnea, and now I need oxygen and a machine to breath effectly at night so my body can start healing.

    2. Insurance need to pay for massage thearapy if a person has pain. Neuromusclar massage helps move the spinal fluid and oxanates our blood and helps to minimize pain.

    3. Doctors should not be limited to what type of pain medication that they can perscribe, if a person has a real painful illness.

    4. Handicap Parking Plackards - some doctors wil not complete paperwork for CFS or FMS due to they think we are ok and look fine, however its the pain, fatique and muscle stiffness that limits our ability to ambulate properly.

    I hope this helps.

    Have a Blessed Day !


  4. Kellyslaw

    Kellyslaw New Member

    Dear Featherme: I have been reading posts from fellow FM and CFS sufferers, and one of the consistant issues I have noticed is in the difficulty that people with this DD have in getting approval for either SS or SDI. It would be wonderful if someone would create a written policy or guideline for the SS agency to follow for these diseases. Also, please mention Fibromyalgia Awarness Day scheduled for May 12, 2007. Discemination of information regarding these very difficult diseases are of ut most importance. People need to fully understand just how debilitating and painful these diseases are.

    Thank you from the bottom of my heart for your willingness to be our "poster child."

    Fibro Hugs,
    Kelly
  5. debugg

    debugg New Member

    What tv show?? and when??
  6. featherme

    featherme New Member

    Thank you all for some great information! The TV Show is a local PBS Show called Health Links and hosted by Benita Zahn. I live in the Capital District area of New York State. It will be broadcast up north,and south to around Kingston, out to the west around Amsterdam, and over to the Pittsfield, MA area and may reach parts of CT. VT gets in on it too.

    Those of you who are Christians please pray for me as I am having a colonoscopy Monday at noon and you all know how much a procedure takes out of us. I need to be in good shape to drive and speak intelligently as possible for the show which is Tuesday night at 7:30. Thank you.

    featherme
  7. ksl25

    ksl25 New Member

    thank you for doing this and i hope you survive monday well enough to be great on the show!

    also, maybe you can ask them to post this on their website:
    A letter to the healthy (not the same as "Letter to normals")
    02/10/07 03:42 PM
    Found this at http://www.fms-help.com/healthy.htm & thought you all might like to read it and perhaps distribute to people who don't understand.

    Best wishes

    www.freewebs.com/fibromyalgiaawareness



    If you were born with healthy genes, you may know me but you don't understand me. I was not as lucky as you. I inherited the predisposition to chronic pain, fatigue and forgetfulness. I was diagnosed with fibromyalgia (FMS) after months, years or even decades of mysterious physical and emotional problems. Because you didn't know how sick I was, you called me lazy, a malingerer, or simply ridiculous. If you have the time to read on, I would like to help you understand how different I am from you.

    WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA

    1. FMS is not the newest fad disease. In fact, it isn't a disease at all, and it isn't even new. In 1815, a surgeon at the University of Edenburgh, William Balfour, described fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoid arthritis and lupus are also syndromes.

    2. The many physical and emotional problems associated with FMS are not psychological in origin. This is not an "all in your head" disorder. In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability.

    3. Syndromes strike life-long athletes as viciously as they do couch potatoes. They can be disabling and depressing, interfering with even the simplest activities of daily life.

    WHAT YOU SHOULD KNOW ABOUT ME

    1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

    2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

    3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

    4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

    5. My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child jump on his pogo-stick or skateboard in my courtyard. I really can't stand it.

    6. My intolerance - I can't stand heat, either. Or humidity. If I am a man, I sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

    7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

    8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

    9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.

    10. My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

    11. My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or months or even years. In fact, the good days are what keep me going.

    12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

    I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.

    Author's note: This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one of the over 10,000,000 people with FMS, but it can help the healthy person understand how devastating this illness can be. Please do not take these people and their pain lightly. You wouldn't want to spend even a day in their shoes...or their bodies.

  8. bluewing

    bluewing New Member

    Living with intense pain, complete and utter exhaustion and having to hide it for more than 45 years has been a nightmare. Now, I know I have fms, cfs/me, arthritis... And I now know I am not alone!! It's amazing we are so alike!
  9. sues1

    sues1 New Member

    I try to be cheerful and fun......but sometimes I am not always upbeat. I do well for the way I feel.

    No one knows when such can strike them


    Sometimes I am trying to cope with the aches and pains so my energy just is not there. I sometimes will suddenly glare at someone, that is when a stabbing pain goes through me. I do not always laugh at things, yet I still enjoy hearing all. I enjoy everyone, just like old times.

    But look at me and you will see.....I am still there. I love talking to you, seeing you, being a part of friends and family. I need all of you in my life. I can cope with this energy drain and the pain, but I need you to treat me the same.

    Invite me to go and eat with you. Say can you come,it'll be Dutch Treat. That is fine. I have a few dollars to spend eating out. I just need someone to eat with when my family is not around. OR I need to see others in my live, besides my family.

    When I can not always go wherever with you, do not stop asking. I am not contagious. I many times will pep up and be more my old self after being with you for a while. I need this in my life.

    Look and see.......and understand. No one knows when such can strike them. Blessings.


    [This Message was Edited on 02/11/2007]
    [This Message was Edited on 02/12/2007]
  10. sues1

    sues1 New Member

    Sometimes there is a site to go to and see it on the computer. If anyone know of this with this station, let us know please.

    Also so much has been given to the public on mental health this ME (SCFIDS/FIBRO). We are depleted of certain chemicals that we need to cope with pain, because of the pain...Yadda Yadda.
  11. blkkat

    blkkat New Member

    i will pray that your DR thing will have a good outcome, i had one myself. fyi it may be hard to sit ,so use some form of pain meds if your DR says its ok. also heating pad on tummy helps.GOD will be with you.he will also be with you during the t.v tapeing/liveshow. wish i could see it, im in washington state. thankyou from all of us. one thing i wish family ,others would realize is we may look well groomed ,but were very ill, alot of others have all diff. illnesses, but most have a treament or meds. that helps with a flare or blood pressure cluclose-sorry bad speller, hope you can understand what im trying to say. what im saying is knowone with any power even trys to even get money, research, campain, tv ads to evengive us a face ,or how this is killing our dreams,familys,willingness to even dare to hope that anyone will get off their dead butts and get it out their. were not crazy! i cant help the DR arent willing to try just alittle to help and realize all of us cant be nuts . this sounds bad but at least a cancer person or another DD they have some sort of meds to ease or slow down what their going threw. but us when we mention FM-CFS it seems they give us this LOOK of oh boy its one of these people . pump us full of pills tell us to put the pain behide us, get a hobby, go for walks it will help ,eat diff.and last but not least I HOPE YOU GET FEELING BETTER SOON!!! and the one of all ,have you thought about seeing a shrink, heres a good one and they had you a paper w/a # of a (DR) to call and say so give it a try it may help,get back after you see them and have them send me your report before your next appt. ok? ok see you then .PURE CRAPE!!! im sorry im must be venting really i will pray for you. GOD BLESS -BLKKAT-to you featherme, EPHESIANS 4:1
  12. wrthster

    wrthster New Member

    Thank you very much for doing this. I think people need to know, that this is a very serious disease that affects the immune, endocrine, and neurological systems. Further, I think in most cases it is either caused by infection, or infection is the result of the body not functioning properly.
  13. sues1

    sues1 New Member

    It sounds like you will do fine. There is no way to cover everything, but your last posting said much.

    Thanks for being there to get a message out.

    This would make a good Marathon......LOL.

    Blessings.....Susan
  14. suzetal

    suzetal New Member

    Some of us also suffer from CFS.

    Good Luck
    I am praying for you.

    Sue
  15. desertlass

    desertlass New Member

    Loss of functionality and reliability has led to a loss of friends and normal socialization. If I could drive to a professional therapist, I would be so elated I wouldn't need one! if there was a support group in my area it would be a miracle if anyone could attend. The leader would be sitting alone with everyone on speaker phone from their homes. If it weren't for the websites that have been put together by fm/cfs patients themselves, I don't know who I would talk to about this illness and its impact on my life.

    Thank you for taking this on! Many prayers and blessings.
    [This Message was Edited on 02/12/2007]
  16. featherme

    featherme New Member

    Having the colonoscopy today was good timing as it reminded me that the FM part of me is still active in ways I knew not! It was so painful, I cannot tell you how bad it was. I was told they gave me double the meds they give others and they couldn't give me anymore cause they wanted to keep me breathing! As far as conscious sedation goes in my book, it's for the birds. I remember all of the pain and screaming - bet they loved that. I need to ask tomorrow night what should have happened for me - different anesthesia such as...

    They gave me oxygen and now I have I miserable headache. I figure my brain must have been awakened in parts where oxygen doesn't travel too frequently.

    I like looking good even when I am in pain. It's harder for fatigue. I don't like sympathy from others. I'll accept empathy. Looking good, for me, allows me to let the joy show that I have inside. I would say from outside appearances right now my joy is not showing because of my headache - I don't do headaches well. I still have my joy
    PTL.
  17. PJC71

    PJC71 New Member

    I agree with all of the posts and everything we go through. There should also be emphasis on the family dynamics changed when a loved one gets this illness. Not only do you deal with the pain, doctor's, ignorance, you watch the ones around you dailysuffer for what you are going through. This hurts whole families, not just individuals.
  18. jmcdelaney

    jmcdelaney New Member

    Someone mentioned furstrated. Similary is the desire to be useful. I would like to add that most of us here used to be extremly active and now we can't keep up with daily chores. Even bathing is exhausting.

    I used to clean the entire house, bake, cook GREAT dinners, mow the lawn (1 acre with a push mower) trim the endless hedges, weed, clean the pool, paint rooms, you name it, I did it. Now I am lucky if I can take a shower and have enough energy to do a couple loads of laundry. (And thank GOD for take out meals!) My husband has taken over much of the workload, and I am blessed that he does it with a smile, but the smile only makes me feel more guilty for not being able to do what I used to.

    Wishing to be useful, Joann
  19. JLH

    JLH New Member

    For your show ....

    Did you know that this one illness had so many symptoms!!!

    Master Symptom List for CFS, FMS, CMP & Lyme Disease

    Note on Symptoms: many of these are symptoms common to other diseases. Getting a proper diagnosis for CFS, FM, CMP, Lyme, and other tick-borne diseases is as much ruling out other diseases as it is looking at the clues in dozens of tests and the actual physical exam.

    By Melissa Kaplan, The Carousel Network, May/June 2003



    AUTONOMIC NERVOUS SYSTEM / ENDOCRINE / IMMUNE / HORMONE

    Abnormal sensitivity to hot or cold
    Allergies (nasal, other; new, increased or worsening)
    Canker sores (frequent)
    Chills and/or shakes when hungry (may occur instead of feeling hungry)
    Cold hands and feet
    Feeling hot or cold often
    Flu-like symptoms, on-going or recurrent after initial gradual or acute onset; includes mild fever (99.5-101.5 F / 37.5-38.6 C), chills, extreme fatigue after minimal exertion
    Hair loss (alopecia)
    Herpes simplex or shingles rash
    Increased susceptibility to infections
    Low-grade fevers
    Low blood pressure (below 110/70)
    Low body temperature (below 97.5)
    Lymph nodes painful, swollen (in neck; under arms)
    Night sweats (not related to menopause or fever)
    Orthostatic Intolerance (neurally mediated hypotension)
    Reactive hypoglycemia and insulin resistance
    Thirst, increased
    Temperature irregularities; often feeling hot or cold irrespective of actual ambient temperature
    and body temperature; low body temperature (below 97.6 F / 36.4 C)
    Thyroid inflammation (acute thyroiditis; hypothyroidism; Hashimoto's thyroiditis)


    CARDIOPULMONARY / ESPIRATORY / CIRCULATORY

    Cardiac abnormalities (mitral valve prolapse; myocarditis; tachycardia; palpitations;
    dysrhythmia)
    Cough
    Dyspnea (out of breath) or shortness of breath (air hunger) after minimal or no exertion
    Heart attack
    Heart palpitations
    Heart pounds so hard it shakes body, bed
    Pulse skips
    Serious rhythm disturbances of heart
    Sighing, frequent, not related to mental/emotional state
    Stroke
    Vasculitis


    CENTRAL NERVOUS SYSTEM / NEUROLOGIAL / NEUROPATHIC / OTOLOGIC

    Abnormal CAT, MRI, and/or SPECT scans
    Alcohol intolerance
    Aseptic meningitis
    "Brain fog"; inability to think clearly (often referred to as “fibro fog”)
    Difficulty moving tongue to speak
    Diminished or absent reflexes
    Fainting or blackouts; feeling like you might faint
    Headaches (frequent, severe, recurring)
    Hearing fluctuations (sounds fade then return)
    Hearing changes, often from day to day (need to turn up, then down, volume of radio, TV)
    Joint or arthritic pain not relieved by NSAIDs (ie, ibuprofen)
    Libido (decreased)
    Light-headedness, feeling spaced-out
    Migraine headaches
    Muscle twitching
    Noise intolerance
    Paralysis or severe weakness of limb
    Parasthesias (numbness, tingling, crawling, itching sensations) in face, head, torso, extremities
    Photosensitivity
    Radiculitis
    Seizures; seizure-like episodes
    Sensory alterations (hyper- or hyposensitivity) - smell, taste, hearing (noise intolerance)
    Severe muscle weakness
    Syncope (fainting)
    Tinnitus (ringing/noises in one or both ears)
    Touch or weight of clothing on or against body causes discomfort or pain
    Tremors, trembling


    COGNITIVE FUNCTION

    Becoming lost in familiar locations when driving
    Difficulty with simple calculations (e.g., balancing checkbook)
    Difficulty expressing ideas in words
    Difficulty moving your mouth to speak
    Difficulty making decisions
    Difficulty following directions while driving
    Difficulty remembering names of objects
    Difficulty remembering names of people
    Difficulty recognizing faces
    Difficulty following simple written instructions
    Difficulty following complicated written instructions
    Difficulty following simple oral (spoken) instructions
    Difficulty following complicated oral (spoken) instructions
    Difficulty integrating information (putting ideas together to form a complete picture or concept)
    Difficulty putting tasks or things in proper sequence
    Difficulty paying attention
    Difficulty following a conversation when background noise is present
    Difficulty making and/or retrieving memories (long/short-term memory deficits)
    Difficulty understanding what you read
    Easily distracted during a task
    Feeling too disoriented to drive
    Forgetting how to do routine things
    Forgetting the use of common objects (such as, what to do with the shampoo when you are standing in the shower)
    Forgetting how to get to familiar places
    Impaired ability to concentrate
    Losing your train of thought in the middle of a sentence
    Losing track in the middle of a task (remembering what to do next)
    Poor judgment
    Switching left and right
    Slowed and/or slurred speech
    Stuttering; stammering
    Transposition (reversal) of numbers, words and/or letters when you speak and/or speak
    Word-finding difficulty
    Using the wrong word


    DIGESTIVE / HEPATIC

    Bloating; intestinal gas
    Decreased appetite
    Digestive chemicals (acid, enzymes) reduced or absent
    Esophageal reflux; heartburn
    Frequent constipation
    Frequent diarrhea
    Food cravings (especially carbohydrates, sweets)
    Food/Substance intolerance
    IBS
    Liver function impaired; mild abnormalities
    Increased appetite
    Nausea
    Spleen tender or enlarged
    Stomach ache, cramps
    Vomiting
    Weight gain or loss


    EQUILIBRIUM /PERCEPTION

    Bite your cheeks or tongue frequently
    Bump into things frequently
    Difficulty discriminating printed matter despite proper vision correction
    Distances (difficulty judging when driving; when putting things down on surfaces)
    Dizziness or vertigo
    Dropping things frequently
    Dysequilibrium (balance problems)
    Impaired coordination
    Loss of balance when standing with eyes closed
    Perception (not quite seeing what you are looking at)
    Some patterns (stripes, checks) cause dizziness
    Spatial disorientation
    Staggering gait (clumsy walking)
    Words on printed page appear to jump off page or disappear when staring at them


    EYES / VISION

    Acuity changes not related to prescription changes
    Blind spots
    Blurred vision
    Conjunctivitis
    Diminished visual acuity in absence of actual vision change
    Drooping eyelid
    Double vision
    Eye pain
    Flashes of light perceived peripherally
    Optic neuritis or atrophy
    Oscillopsia (image jiggles)
    Prescription changes more frequently
    Pressure sensation behind eyes
    Red and/or tearing eyes
    Retinal damage
    Slowed accommodation (switching focus from far to near, near to far)
    Spots or floaters not related to migraines
    Swelling around eyes
    Uveitis and/or iritis
    Wandering or lazy eye


    HEAD / NECK / MOUTH
    Bell's palsy (facial paralysis, one or both sides)
    Bruxism (grinding/clenching teeth)
    Canker sores
    Dizziness when you turn your head or move
    Dry chronic cough
    Dry eyes, nose and mouth (sicca syndrome)
    Pain in ears, palate, gums
    Periodontal disease
    Prickling pain along skin of jaw
    Problems swallowing, chewing
    Runny nose in absence of cold, allergies
    Sinus infections
    Sore spot on the top of your head
    Temperomandibular Joint Syndrome (TMJ)
    Unexplained toothaches
    Xerostoma (dry mouth)


    MUSCULOSKELETAL

    Arthritic pain that migrates from joint to joint
    Carpal tunnel syndrome
    Frozen shoulder
    Intermittent joint swelling
    Joint aches (arthralgia)
    Joint pain, without redness or swelling
    Loss of tone
    "Lumpy, bumpy" long muscles
    Morning stiffness
    Muscle aches (myalgia)
    Muscle pain, stiffness, weakness
    Pyriform muscle syndrome
    Reduced range of motion
    Stiff neck
    Writing causes pain in hand, arm shoulder


    PAIN SYMPTOMS

    Abdominal pain
    Chest pain
    Debilitating generalized pain (arms, neck, shoulders, hips, legs, etc.)
    Muscle pain (all over your body)
    Painful tender points (FMS: 11 out of 18 tender points)
    Shooting or stabbing pains

    PSYCHOLOGICAL SYMPTOMS / MOOD / EMOTIONS

    Abrupt/Unpredictable mood swings
    Anxiety or fear for no obvious reason
    Appetite increase/decrease
    Decreased self-esteem
    Depression or depressed mood
    Feeling helpless and/or hopeless
    Feeling worthless
    Frequent crying for no reason
    Helpless/Hopeless feelings
    Inability to enjoy previously enjoyed activities
    Irritability; over-reaction
    New phobias/irrational fears
    Panic attacks
    Personality changes (labile, irritable, anxious, confused, forgetful)
    Phobias (irrational fears)
    Rage attacks; anger outbursts for little or no reason
    Suicidal thoughts or suicide attempts


    SENSITIVITIES

    Acute or abnormal reactions to medications
    Alteration in taste, smell, and/or hearing
    Chemicals (alcohol, medications, perfumes, smells; lower tolerance for)
    Food sensitivities
    Increased perception of and sensitivity to noise
    Light sensitivity
    Sensitivity to odors (able to detect and/or react in concentrations far lower than before and that healthy people cannot smell)


    SKIN / NAILS

    Abnormal scarring
    Acrodermatitis Chronica Atrophician
    Blotchy or mottled skin
    Bruise easily
    Bruises may take longer to appear, and/or longer to fade
    Bull's-eye (Erythema migrans) on light skin (resembles a bruise on dark skin)
    Dermographia (minor scratch pressure on skin leaves vivid red welts)
    Dry, itchy skin
    Easily scar
    Eczema or psoriasis
    Fragile nails
    Frequent skin irritations
    Lymphadenosis benigna cutis
    Nails that curve under or downward
    Overgrowing connective tissue (ingrown hair, adhesions, thickened/split cuticles, cysts, fibroids)
    Painful skin (abnormal/excessive pain when scratched or rubbed)
    "Paper" skin (feels fragile, tissue-thin when rubbed)
    Rashes on body, face
    Vertical ridges or beads in nails


    SLEEP SYMPTOMS

    Abnormal brain activity in stage 4 sleep
    Altered sleep/wake patterns (alert/energetic late at night, sleepy during day
    Difficulty falling asleep
    Difficulty staying asleep (frequent and/or prolonged awakenings)
    Hypersomnia (excessive sleeping)
    Myclonus (restless leg syndrome; occasional jerking of entire body)
    Nightmares (frequent, extremely vivid and/or disturbing)
    Unrefreshing/Non-restorative sleep


    UROGENITAL / REPRODUCTIVE

    Decreased libido
    Discharge from breast or galactorrhea
    Endometriosis
    Frequent urination
    Incontinence
    Impotence
    Infant: premature; low birth weight; low muscle tone; failure to thrive
    Interstitial cystitis
    Miscarriage or stillbirth
    Painful intercourse
    Painful urination or bladder
    Pelvic and/or rectal pain
    Prostate pain
    Swollen testicles
    Other symptoms worsen before start of menstruation
    Worsening of PMS


    OTHER

    Abnormal or other changes in sweating
    Activity level reduced to less than 50% of pre-onset level
    Burning sensation (internal and/or external)
    Cancer
    Changed voice
    Changes in sweat odor/body odor
    Delayed reaction to over activity/exertion (onset 24-48 hours after exertion)
    Electromagnetic (EM) sensitivity (electrical storms, full moon, affect function of electrical devices)
    Fatigue, prolonged, disabling, made worse by exertion or stress
    Fibrocystic breasts
    "Galloping" cholesterol and triglycerides
    Hair loss (not related to age, hormones, diet, medication)
    Hands hurt excessively when put in cold water
    Handwriting changes, altering signature and/or other writing
    Hoarseness
    Painful, weak grasp that gives way/lets go
    Periods of concentrated thinking causes physical and mental exhaustion, increases pain
    Sore throat
    Swelling/Idiopathic edema (fluid retention syndrome)
    Symptoms worsened by extremes of temperature (hot, cold), stress, and/or air travel
    Symptoms change focus from time to time, like infection is moving through the body
    Thickened mucus secretions (nose, bowel, vaginal)
    Thickened "sleep" around eyes in mornings
    Very attractive to biting flies and mosquitoes
    Weight changes (usually gain)


    COMMON CO-INFECTIONS AND DISORDERS

    Babesiosis
    Cytomegalovirus (CMV)
    Epstein-Barr virus (EBV)
    Ehrlichiosis
    Herpesvirus
    HHV6
    Iron deficiency
    Mercury or other metal toxicity
    Mycoplasma
    Systemic mold and/or mold sensitivities

    ------------------------------------------------------

    HERE IS ANOTHER FIBRO CHECKLIST:

    GENERAL
    ____ Fatigue, made worse by physical exertion or stress
    ____ Activity level decreased to less than 50% of pre-illness activity level
    ____ Recurrent flu-like illness
    ____ Sore throat
    ____ Hoarseness
    ____ Tender or swollen lymph nodes (glands), especially in neck and underarms
    ____ Shortness of breath (air hunger) with little or no exertion
    ____ Frequent sighing
    ____ Tremor or trembling
    ____ Severe nasal allergies (new allergies or worsening of previous allergies)
    ____ Cough
    ____ Night sweats
    ____ Low-grade fevers
    ____ Feeling cold often
    ____ Feeling hot often
    ____ Cold extremities (hands and feet)
    ____ Low body temperature (below 97.6)
    ____ Low blood pressure (below 110/70)
    ____ Heart palpitations
    ____ Dryness of eyes and/or mouth
    ____ Increased thirst
    ____ Symptoms worsened by temperature changes
    ____ Symptoms worsened by air travel
    ____ Symptoms worsened by stress


    PAIN
    ____ Headache
    ____ Tender points or trigger points
    ____ Muscle pain
    ____ Muscle twitching
    ____ Muscle weakness
    ____ Paralysis or severe weakness of an arm or leg
    ____ Joint pain
    ____ TMJ syndrome
    ____ Chest pain


    GENERAL NEUROLOGICAL
    ____ Lightheadedness; feeling "spaced out"
    ____ Inability to think clearly ("brain fog")
    ____ Seizures
    ____ Seizure-like episodes
    ____ Syncope (fainting) or blackouts
    ____ Sensation that you might faint
    ____ Vertigo or dizziness
    ____ Numbness or tingling sensations
    ____ Tinnitus (ringing in one or both ears)
    ____ Photophobia (sensitivity to light)
    ____ Noise intolerance


    EQUILIBRIUM/PERCEPTION
    ____ Feeling spatially disoriented
    ____ Dysequilibrium (balance difficulty)
    ____ Staggering gait (clumsy walking; bumping into things)
    ____ Dropping things frequently
    ____ Difficulty judging distances (e.g. when driving; placing objects on surfaces)
    ____ "Not quite seeing" what you are looking at



    SLEEP
    ____ Hypersomnia (excessive sleeping)
    ____ Sleep disturbance: unrefreshing or non-restorative sleep
    ____ Sleep disturbance: difficulty falling asleep
    ____ Sleep disturbance: difficulty staying asleep (frequent awakenings)
    ____ Sleep disturbance: vivid or disturbing dreams or nightmares
    ____ Altered sleep/wake schedule (alertness/energy best late at night)


    MOOD/EMOTIONS
    ____ Depressed mood
    ____ Suicidal thoughts
    ____ Suicide attempts
    ____ Feeling worthless
    ____ Frequent crying
    ____ Feeling helpless and/or hopeless
    ____ Inability to enjoy previously enjoyed activities
    ____ Increased appetite
    ____ Decreased appetite
    ____ Anxiety or fear when there is no obvious cause
    ____ Panic attacks
    ____ Irritability; overreaction
    ____ Rage attacks: anger outbursts with little or no cause
    ____ Abrupt, unpredictable mood swings
    ____ Phobias (irrational fears)
    ____ Personality changes


    EYES AND VISION
    ____ Eye pain
    ____ Changes in visual acuity (frequent changes in ability to see well)
    ____ Difficulty with accommodation (switching focus from one thing to another)
    ____ Blind spots in vision


    SENSITIVITIES
    ____ Sensitivities to medications (unable to tolerate "normal" dosage)
    ____ Sensitivities to odors (e.g., cleaning products, exhaust fumes, colognes, hair sprays)
    ____ Sensitivities to foods
    ____ Alcohol intolerance
    ____ Alteration of taste, smell, and/or hearing


    UROGENITAL
    ____ Frequent urination
    ____ Painful urination or bladder pain
    ____ Prostate pain
    ____ Impotence
    ____ Endometriosis
    ____ Worsening of premenstrual syndrome (PMS)
    ____ Decreased libido (sex drive)


    GASTROINTESTINAL
    ____ Stomach ache; abdominal cramps
    ____ Nausea
    ____ Vomiting
    ____ Esophageal reflux (heartburn)
    ____ Frequent diarrhea
    ____ Frequent constipation
    ____ Bloating; intestinal gas
    ____ Decreased appetite
    ____ Increased appetite
    ____ Food cravings
    ____ Weight gain (____ lbs)
    ____ Weight loss (____ lbs)


    SKIN
    ____ Rashes or sores
    ____ Eczema or psoriasis


    OTHER
    ____ Hair loss
    ____ Mitral valve prolapse
    ____ Cancer
    ____ Dental problems
    ____ Periodontal (gum) disease
    ____ Aphthous ulcers (canker sores)


    COGNITIVE
    ____ Difficulty with simple calculations (e.g., balancing checkbook)
    ____ Word-finding difficulty
    ____ Using the wrong word
    ____ Difficulty expressing ideas in words
    ____ Difficulty moving your mouth to speak
    ____ Slowed speech
    ____ Stuttering; stammering
    ____ Impaired ability to concentrate
    ____ Easily distracted during a task
    ____ Difficulty paying attention
    ____ Difficulty following a conversation when background noise is present
    ____ Losing your train of thought in the middle of a sentence
    ____ Difficulty putting tasks or things in proper sequence
    ____ Losing track in the middle of a task (remembering what to do next)
    ____ Difficulty with short-term memory
    ____ Difficulty with long-term memory
    ____ Forgetting how to do routine things
    ____ Difficulty understanding what you read
    ____ Switching left and right
    ____ Transposition (reversal) of numbers, words and/or letters when you speak
    ____ Transposition (reversal) of numbers, words and/or letters when you write
    ____ Difficulty remembering names of objects
    ____ Difficulty remembering names of people
    ____ Difficulty recognizing faces
    ____ Difficulty following simple written instructions
    ____ Difficulty following complicated written instructions
    ____ Difficulty following simple oral (spoken) instructions
    ____ Difficulty following complicated oral (spoken) instructions
    ____ Poor judgment
    ____ Difficulty making decisions
    ____ Difficulty integrating information (putting ideas together to form a complete picture or concept)
    ____ Difficulty following directions while driving
    ____ Becoming lost in familiar locations when driving
    ____ Feeling too disoriented to drive


    ---------------------------------------------------------
    and, we are affected by the following "four areas":


    THE FOUR AREAS OF FUNCTIONING

    (a) Daily living skills

    Activities of daily living include cooking, cleaning, and laundry. It includes getting dressed, brushing your teeth, going to the grocery store, and paying your rent on time.

    If you need reminders to do those kinds of tasks, or just don’t do them, you have "marked restriction of activities of daily living." That is important in proving that your mental illness prevents you from working.



    (b) Social functioning

    Social functioning means knowing how to say the right thing, and when. Evictions, firings, fear of strangers, and social isolation are important signs that you can’t work.

    Are you unable to start up a conversation? Do you make rude remarks-- or "clam up" and don’t speak to others? Can you get along okay with family, neighbors, and the landlord? Can you get things done with a group of people? How do you act with people in authority? Those social skills are necessary to work, no matter what the job.



    (c) Concentration, persistence, or pace

    If you can’t complete tasks in a timely manner, that shows you have a deficiency in your "pace." Lots of people start a project and don’t finish it, especially with a hobby. But if you start important projects and never finish them, because your mind wanders, then you have a significant deficiency in concentration and you can’t work.



    (d) Episodes of deterioration or decompensation

    Decompensation means that you withdraw from the situation when you feel stress, or perhaps you "blow up" all of a sudden when things aren’t going right.

    Do you go into a tailspin sometimes, and lose your cool? Does this happen even when you are trying to be on your best behavior? Any exacerbation of your signs and symptoms is an "episode" that keeps you from working. Having episodes like that, repeatedly, is a sure sign that you can’t function at work.

  20. featherme

    featherme New Member

    not just all fibro. Thank you for your exhaustive list. I will put it on my web site.

    You all have been so helpful and informative. Thank you so very much.

    feather